Baby Blake's Journey in Boston

As some of you may know Blake’s 3 short months of life have not been easy. Blake was born full term on October 6th and shortly after started having severe episodes of choking, gasping for air, trouble swallowing/feeding, gagging, making a horrible stridor sound, oxygen drops and blue episodes that landed her in the NICU for the first week of life. She was diagnosed with severe dysphagia, failure to thrive and had an NG tube (feeding tube) placed at 2.5 weeks old. Since then, my sister has spent several weeks in the hospital with Blake trying to figure out what’s going on and why this is happening. They are currently at Children’s in Dallas and this admission alone Blake has gone under anesthesia twice and had several scopes/scans/studies and biopsies done. Blake's team of doctors include Cardiologist, Pulmonologist, Gastroenterologist, ENT and has been seen by Neurologists as well. Last week, they received a lot of unexpected news. News that no parents ever want to hear and that no child ever deserves to go through.

Blake was diagnosed with a rare congenital vascular anomaly of the aortic arch (ARSA - Aberrant Right Subclavian Artery), along with Type 1 Laryngeal Cleft (an abnormal opening between the larynx and the esophagus through which food and liquid can pass through the larynx to the lungs) which they are currently waiting on Pulmonology to get with ENT and decide whether or not surgery is needed to fill that gap at this time, confirmation that she has aspirated into her right lung, severe obstructive sleep apnea (which doctors haven't found the obstruction yet), mild central sleep apnea with severe hypoxemia and a hole in her heart (a PDA which will hopefully close up on its own soon, if not it could cause her problems later on in life).

In regards to ARSA, this arch is the top part of the main artery carrying blood away from the heart to the rest of your body. The normal Aortic Arch anatomy has 3 branches. With her abnormal anatomy the Right Subclavian Artery forms its own 4th branch on the left side and then routes around the back side of the esophagus and trachea – right now we know for certain that it’s causing compression on her esophagus but what we don't know is if the compression is significant enough to cause her severe symptoms. ARSA is rare. So rare that it is only diagnosed in about 1% of the population, and of that 1% only about 10% are symptomatic and require intervention. Blake is potentially looking at open heart surgery. We have no clue what all struggles are ahead for Blake and her mommy and daddy. We are all just praying non-stop!!! As you can imagine, hearing all of this hit them like a ton of bricks.

Blake can't take anything by mouth at all, not even a tiny dose of medication or she chokes. She has progressively gotten worse. It is so bad now that she now chokes up on her own saliva. It's absolutely terrifying!

Although she has spent the majority of her life being in the hospital hooked up to machines, tubes, and seeing doctors and nurses around the clock...she knows nothing but love from her mommy and daddy and somehow smiles bigger and happier than ever. She is a warrior! She has more grit and heart than I've ever seen from most adults, that's for sure.

Her team of doctors has never dealt with a case like hers and thankfully sent her records out for some second opinions. Blake needs doctors that specialize in this and are familiar with it, to say the least. A HUGE blessing and glimmer of hope arose when the director of the Aerodigestive Clinic at Boston Children’s Hospital reached out and wants to see Blake in person!!! Boston is the #1 Pediatric Hospital in the U.S. and fortunately has some experience with ARSA so this is BIG. Our entire family is praying that there is finally someone that can help our sweet, precious, innocent baby!!! However, Boston is 2,000 miles away from them and insurance will not cover this transfer.

Bethany and Brandon have felt so defeated and helpless. They finally are on a path moving forward to answers and solutions! These last 3 months have not only taken a toll on this amazing family emotionally but financially as well. Without knowing what they face next, they just want to be together again, but all want answers for Blake first. Bethany and Brandon have missed so much work, which means a lack of income for 3 months and for who knows how much longer. Bethany is living at the hospital with Blake and trying to work remotely as much as possible but that hasn't been easy. She misses her other kiddos so much and they miss her too. Fighting for your child's life is hands down the most stressful thing a family can go through and it certainly puts life into perspective with what I consider my own battles. I simply can not imagine being in their parental shoes right now. Bethany and Brandon are the hardest working, tenacious, giving, and loving people. They help others constantly without question. They are givers by nature. They have never been recipients of financial help and have never asked for it. Times are beyond critical at this point in an attempt to save their baby girl's life. I am reaching out because my sister Bethany, and my brother-in-law NEED help. Their baby (my precious niece), Blake Marie, deserves answers and to live a normal life...a life where she can eat and breathe without struggling. I'm going to repeat that because it deserves repeating and is incomprehensible. Baby Blake deserves a life where she can eat and breathe without struggling. Try to imagine that. That is so hard to grasp and wrap our heads around. It's unimaginable.

Blake's parents, sister and brothers, and our entire family just want answers AND solutions for her. While we are all seeking prayers, I am seeking financial help for my sister and her beautiful family. We MUST get Blake to Boston. We must get Blake the help she needs. The very last thing that Bethany and Brandon need to worry about (and it goes without saying that they already are) is how to make up lost wages, how to pay their bills and feed their family, how to get Blake from Texas to Boston safely, and how to financially survive as a family of 6 with the future being unknown of what all they have yet to face. 

Every dollar helps and every prayer is worth a million.

Blessings to you all, from our family to yours.